To most of us, feeling our heartbeat and our lungs fill with air seems like second nature. The same goes for feeling pain when we run into something or have been hit by an object. What about going to the bathroom? You know when you have to go right? It may seem obvious, except when it isn’t. Some people never feel those things! The awareness we have about the inner workings of our body is called interoception, our 8th sense.
When a child has limited interoception feedback from their body it leads to some scary situations. As parents, we rely on our children to tell us how they are feeling. When they are little we look for outward signs such as pain, crying, bruising, bleeding, and our own eyes watching them fall. We help them to learn what is hot, what is sharp, what is too high, what is unsafe by guiding them through situations all the while soothing their hurts and verbalizing our own fears for them. What do you do when your child runs into every corner, bounces off, and keeps going? Burning their fingers because “hot” means nothing to them? Or helping them to learn falling on cement hurts? This is the challenge of parenting an SPD child with interoception challenges.
Interoception allows us to regulate our internal physical states such as: hunger, thirst, pain,
bathroom needs, heart, breathing, & digestion. Just like our other senses interoception can have sensitivities that both under & over function.
Children who have issues with their interoceptive sense can:
• have bedwetting and accidents
• never feeling thirsty or hungry, or always feeling thirsty or hungry
• have difficulty recognizing and communicating internal body states or sensations (feeling hot/cold, pain etc)
• lack emotion regulation- not feeling they are angry before they verbally or physically lash out
• be distracted by internal sensory input and unable to communicate it, like ear ringing
• use their voice level & intensity to use sound to cover up unwanted sensory stimuli
To be hypersensitive to this input can mean the slightest sensations can lead to heightened anxiety, distraction, and even immense pain. To be hyposensitive means that the input needs to be extraordinarily immense in order for it to be received.This leads to misinterpretation of communication of their needs like to be suddenly starving, wetting accidents, extreme defiance of identifying their needs, and even painful feeling tickles. Imagine the amount of suffering these little bodies endure to have these signals crossed.
The body knows how to get attention. It will often give you outward signals that a child is struggling with unknown pain. Facial tics, grimaces, and odd body movements are all signs of the body seeking attention for something that is wrong. Learning what to look for in your own child is key to helping them learn about their bodies and keep them safe.
For B, when he was a young toddler, the doctors were always concerned because by the time I thought something was wrong and brought him in, the pain or infection was severe. B’s body would tell him to stop eating. Several times, once he stopped eating, I would take him in and doctor would be concerned because he had strep throat and double ear infections! He even stopped eating when he had an infection in his finger (which we only saw when it was severely inflamed). Most recently we thought he had had the flu with fever and diarrhea, yet his mood was silly and he was positive. He went through the normal 7-10 days of being “sick,” although no one but us would ever know it. We went on vacation and he swam and played with his sister, no concerns from us at all. We got home after 2 weeks and his appetite was low and he was losing weight. I began to wonder if something else was going on. I made a doctors appointment once he hadn’t eaten for 2 days as this is his body’s “signal” that something is wrong.
The morning of the appointment B had me help him when cleaning up from the bathroom and I noticed blood in his stool. Obviously, I was very concerned. The doctor however was not overly concerned. B was uncomfortable and wiggled quite a bit, stating it “tickles” when his stomach is pressed on. We decide to run some tests on stool samples and get an x-ray. The next day the doctor called, his stool was compacted so we started him on stool softener.
Six days later the call from the pediatrician didn’t start with pleasantries, it started with “where is B?” I stated “school.” His response “go get him now, I'm sending you a prescription for a special antibiotic, he has a clostridium difficile, or C. diff infection, its highly infectious.” (C-Diff is a bacterial infection in the gastrointestinal system, which is painful and can lead to severe complications if not treated.) After explaining he states “I’m calling the children's hospital to get him into the specialist ASAP,” click. The pediatrician hung up on me. This feeling is not the type you want to have as a parent, especially not after talking to their pediatrician. I promptly looked up C-Diff. I tried to keep my cool as I went to get B, cancelling my day, and hurried to the pharmacy. The next day I scheduled an appointment 2 weeks out with the pediatric gastroenterology. Meanwhile, B is fine, he isn't acting any different and the only way we know something is still wrong is his appetite remains low and stool remains slightly bloody. Once we get to the specialist, we review his history and she is questioning as to “Where did he get the C-diff from?” to which my answer is we don’t know. She asks how are we managing his pain? Pain what pain? I tell the story all over again, he doesn’t “feel” pain. She states “this is severe pain, he has to feel it.” I looked at her blankly. We both look at him lying upside down on the examining table, head hanging off, smiling at us.
This is the struggle of many parents, the disbelief and questioning of of our understanding of our own children. This is why we must persevere and be their voice so that in time they can learn and communicate their own body’s signals so they do not have to suffer.
B is fine now, no further infections or damage-this time. I wait for the next wound, the next infection, the next broken bone. We have learned concussion protocol for all the falls and learning what the "hurt" cry really is for him. So I wait for the next time to advocate & fight with the professionals but more than anything I wait for him to grow, to learn about himself and learn to advocate for his own needs to be met. Because for now I will be there, as long as he needs me, always and whenever. But I can’t be there forever and one day, he’ll need to explain his body’s inability to feel pain to the baffled professionals all on his own.
Interoception pdf here
Interoceptive Input pdf here